EXECUTIVE DIRECTOR FOR A RARE DISEASE FOUNDATION

The Executive Director serves as the chief executive officer of the DDX3X Foundation, responsible for the organization's overall leadership, strategic direction, and day-to-day management. Working in partnership with the Board of Directors and Scientific Advisors, the Executive Director advances the Foundation's mission to accelerate research, improve clinical care, support families, and raise global awareness of DDX3X syndrome.

The Executive Director oversees all aspects of Foundation operations, including strategic planning, research initiatives, fundraising, communications, partnerships, and organizational development, ensuring that programs are executed efficiently, resources are managed responsibly, and the organization's impact continues to grow.

This position will work in conjunction with a part-time Chief Scientific Officer.

Key Responsibilities

Strategic Leadership

• Implement the Foundation's strategic plan in collaboration with the Board of Directors.
• Identify opportunities to expand the Foundation's programs, partnerships, and impact.
• Develop annual organizational goals and measurable objectives.
• Provide leadership in advancing the Foundation's mission and long-term vision.

Organizational Management

• Oversee day-to-day operations of the Foundation.
• Build and maintain organizational systems, policies, and procedures.

Research & Program Leadership

• Oversee the Foundation's research portfolio, including grant programs, scientific collaborations, and strategic initiatives.
• Partner with the Scientific Advisory Board, researchers, clinicians, and institutional collaborators to advance research priorities.
• Support the development of patient registries and natural history studies.
• Expand educational and family support programming to remain responsive to community needs.

Financial Management

• Develop and manage the Foundation's annual operating budget.
• Oversee financial reporting, forecasting, and cash flow management.
• Work with external accountants and auditors to maintain financial transparency and compliance.

Board Relations & Governance

• Serve as the primary liaison to the Board of Directors.
• Prepare Board meeting agendas, reports, and strategic updates.
• Support Board committees and implement Board-approved initiatives.

External Relations

• Represent the Foundation to researchers, clinicians, advocacy organizations, industry partners, government agencies, donors, and the broader rare disease community.
• Build strategic partnerships that advance the Foundation's mission.

Communications & Organizational Oversight

• Oversee the Foundation's communications strategy, including its website, social media, and newsletters.
• Guide messaging that strengthens awareness, donor engagement, and community support.

Qualifications

• Bachelor's degree required; advanced degree in nonprofit management, healthcare, public health, business, or a related field preferred.
• Minimum of 7–10 years of progressive leadership experience in nonprofit management, healthcare, medical research, philanthropy, or a related sector.
• Demonstrated experience managing organizational operations, budgets, and teams.
• Proven success in fundraising and partnership development.
• Strong financial management and strategic planning skills.
• Excellent communication, relationship-building, and leadership abilities.
• Experience working with Boards of Directors and diverse stakeholders.
• Familiarity with rare disease advocacy, biomedical research, or patient organizations is highly desirable.

This is a remote position. This position provides paid vacation, sick, and personal leave; and time off for all federal holidays, plus the week between Christmas and New Year’s.